Symptoms in patients with lung carcinoma: Distinguishing distress from intensity

BACKGROUND. The patient perspective on distress associated with lung carcinoma is important, yet understudied. Previous research on symptom experience generally had not differentiated the dimension symptom intensity/frequency from which symptoms are associated with most distress. The objective of the current study was to determine whether patterns of symptom intensity were similar to patterns of symptom distress, whether patterns were consistent at different time points, whether patterns varied by subgroups, and whether high symptom intensity was equivalent to distress. METHODS. Four hundred adults who were newly diagnosed with inoperable lung carcinoma completed a measure of symptom in tensity/frequency and a new measure of distress associated with symptoms at six time points during the first year after diagnosis. These data were supplemented by field notes by research nurses and by less structured, qualitative interviews. RESULTS. The mean ranking of distress in the total group and in all subgroups remained constant at all time points, with breathing, pain, and fatigue associated with the most distress. In contrast, the pattern of mean rank order of symptom intensity showed little consistency; however, fatigue had the highest intensity scores at all time points. CONCLUSIONS. The current data challenged the uncritical use of summated scores of different symptom items in the context of lung carcinoma. Breathing and pain appeared to function as icons representing threats associated with lung carcinoma, with distress described as related to the past and the present and to expectations for the future. One of the most promising implications of these data was in fostering a preventive paradigm for symptom palliation. © 2005 American Cancer Society.